Last week Aya shared something very inspiring and beautiful with me. An Italian composer had suffered a strange illness which robbed him of almost all his health, forcing him to be bedridden for 2 years, a terrible neurological disease tore through his nervous system and even to this day, he moves and walks with obvious difficulty and shaking. His hands, the instrument and mouth piece of his art, gliding and dancing across the piano, were rendered completely foreign and unresponsive to him. Strangers deaf to his commands where once they spoke with his voice.
I cannot imagine not only the fear and desperation he must have felt, losing not only his body and health, but also his ability to be who he truly is, someone who creates music. Of course, that spirit and love lived on in his mind, through his passion, and through some miracle (whether its a miracle of science or faith, no one can tell), he was able to slowly recover, slowly build himself back up, to reach the point that Aya showed me, a wonderful awards ceremony and concert where he was honored and told his tale. He played a beautiful, moving and somehow hopeful piece called tomorrow, dedicated to all those who are suffering through unimaginable hardship, to believe and hope for a better tomorrow.
The entire scene and the event was very poetic and the accolades and introductions were glowing.
Something within me though was bothered. Something within me was actually responding with anger and fury.
I could see how much this mans story and struggle meant to Aya, how seeing someone share their vulnerabilities and hardship in the face of such sickness was speaking directly to her. Seeing him rise above the odds and return to the stage, to share, even with trembling hands, the message of hope he composed was incredibly beautiful. I could see that and yet still that thorn pierced into my side.
As I listened to the music, I slowly mulled over what was bothering me. Why was I feeling resentful? What was I reacting to? Was it jealousy? Was it anger that life could pick and choose whose prayers to answer, who to heal and who to ignore? No, it was not that petty or selfish. There was something deeper.
I eventually realized what had launched my discontent and it was a line from the glowing introduction the host had given to the artist. Amidst the applause and reverence, the obvious inspiration from someone who had suffered so much, there was a single line, so often uttered, that had set me off. Paraphrasing, what he said was that here was someone who, despite all the pain and suffering he had endured, despite the uncertainty and fear, this was someone who had never once given up hope.
Never given up hope.
This was what had angered me so.
It sounds so simple, and it is one of the most common pieces of advice that people give when you are suffering or facing some incomprehensible diagnosis. When you are told you have cancer, that they do not know what to do, to get your things in order, to do what you can with the time you have, that’s what people tell you, not to give up hope.
When people offer that advice, I understand what they mean, I understand it comes from a place of love and support. They want you to be able to carry it. They want you not to lose hope and succumb to despair. Our society and culture are filled with images and rhetoric about fighting, defeating, overcoming, waging war on things like cancer. We are taught to attack and take no prisoners. To go out fighting and on our shields. Heroic language for the most debasing and dehumanizing time of your life …
We all understand the impulse, the idea, but the words are so hollow and far from reality that it stings when I hear them. And the real reason is not because other people cannot understand the process you are going through, even as someone supporting a loved one. No, the anger is there because those who haven’t experienced this part of life are missing what real strength is, where the real beauty and courage lie.
No one, no one, no one, goes through a sickness or calamity in life that brings you next to death without losing hope. No one loses a partner or parent or child without losing hope.
Everyone faces moments where you are left sitting alone in an empty room, overcome with grief, fear and desperation. Like a drowning man reaching for anything around you, you’ve lost hope and are just trying to survive. Getting through another day is something that just happens without you even knowing how or why. You are in a state of hopelessness that comes and goes like the tide, dragging you into the ocean.
“Never lose hope” is a flat, 2 dimensional view of the world that puts the weight of everything right on you when you are at your weakest point. Life is robbing you of every possession you have, your world as it is, your future, your time, your dreams and potential. Your grief and sorrow are not things you can actually share with others, they are uniquely your own and you have to carry them through each moment of the day.
You will have ups and downs, moments where you forget how dire things are, where you can almost feel like things are normal. And there will be moments where the fragility of life seeps into every interaction, every word, every breathe, and you are just desperately holding on to each memory you create.
Anyone going through a traumatic part of their life, you need to have the space, the comfort and the support to lose hope. Because you will. You will be robbed of hope.
That is where true strength hides. It is in those moments, when you have to face the reality of life, that you break. But then there is another moment after that. And another. And somehow you find life again. You find love again. You find smiles and laughter and you cherish the touch of friends who come to see you and memories shared and reminisced about. You will regain hope. You will find ways to sustain and continue for as long as you can. That is real strength and beauty.
Through everything we are going through, everything Aya has been dealing with, I keep telling her she is the strongest person I have ever known. She doesn’t believe me, and the reason she doesn’t believe me is because everything is impossibly hard to bear. I have seen her filled with rage, anger, despair, hopelessness and frustration, sometimes all at the same time. I have seen her deal with a medical system that treats patients as a number or statistic, incompetent doctors and nurses who clearly do not care about a patients wellbeing, and complete uncertainty that rushes into your life like a bottomless void that eats away all hope. I’ve seen the crushing weight of a prognosis that offers no hope.
And yet, weeks later, days later, and sometimes even moments later, she finds a way to laugh, to appreciate a ray of sunlight that falls on and warms her face, or delights at a delicious treat of gelato, even when moments before she was railing against the injustice of never being able to eat again. Flowers in bloom, a surprising story told by a friend, clouds that make a sunset truly magical, all of them moments of joy and happiness even at the darkest of times.
Life is impossibly hard. Life will steal your hope. I can guarantee that.
But if you are truly strong, if you are someone like Aya who somehow, no matter what life throws her way, cannot be anything but wonderful and positive and loving; not all the time, not without fail, but again and again, in the face of life’s cruelty, that is something amazing.
I know that I am not that strong. I am holding on and doing whatever I can because I love Aya and she inspires me everyday. Without that side of her, without seeing her smile each and everyday, in spite of the odds, in spite of the injustice, in spite of the constant pain she is suffering, I would never be able to carry any of this.
I think it’s important for people to know, that one day when you face the harshest, darkest time of your life, it will not be pretty nor easy. It will be grueling and ugly and dehumanize you. But that is okay. No one goes through this and remains untouched. No one is above being weak and broken and needing help. Allow yourself to suffer and be vulnerable. That is when you’ll find your own inner strength, and the strength of those who love you, and it will help you to make the most of the time you have.
Fighting, fighting when you have no chance of winning, when everything is stacked against you, fighting even when you’ve lost hope, that’s all you can do. And sometimes in that fight, you give up, but there’s no shame in that. Remember to love yourself, to forgive yourself, and to help those you love as much and as often as you can. We all lose hope. Some of us are strong enough and lucky enough to find it again and some of us are blessed to have loved ones who bring hope back to us.